Future directions

1. Improve the transparency of wait times for cancer-related treatment to support people affected by cancer to make informed treatment decisions.  

Impact of this issue

People with cancer need information on how much time is involved in accessing treatment, in both the public and private healthcare sector, and whether that time will impact their treatment outcomes. The current situation of incomplete and opaque information regarding wait times risks people with cancer making treatment choices that could result in suboptimal cancer outcomes, and increased financial burden.¹

While state-based guidelines for hospital waiting times exist, there is an absence of publicly available and comparable information on wait times for cancer services across both the public and private healthcare sectors in Australia. Some people with cancer report lengthy waitlist times to access treatment in the public healthcare system, which may pressure them to opt for privately provided treatment, incurring treatment costs they otherwise would not have had.² In the public health system, although waitlist times for surgeries are reported across Australia by the Australian Institute for Health and Welfare,³ there is no publicly available data reported on what has been dubbed the ‘hidden waitlist’, which is the time people are likely to wait to access an outpatient appointment with a specialist, which is required before treatment can commence.⁴  Only some states and territories report this data and this data is often not consistent enough to be meaningfully compared.

Similarly, the private healthcare sector does not provide publicly available information of waiting times experienced by people accessing healthcare services. The lack of transparent and accessible wait time information to access private healthcare services and treatment is because people accessing these services are expected to ‘shop around’ to compile such information themselves, and there are no current requirements that this information be made public.

Outcomes we’d like to see

• A nationally standardised and publicly accessible waitlist reporting structure, across both the public and private healthcare sector, that includes both cancer treatment services and specialist outpatient services wait list times.

2. Implement innovative funding models to provide value-based and quality care to people affected by cancer while reducing healthcare costs.

Impact of this issue

Reform of the Australian healthcare system has been limited since the introduction of Medicare in 1984. Coupled with structural deficits in the Federal budget, there is growing interest in reforming the way we pay for healthcare in Australia, especially in the movement towards person-centred models.⁵ Value based healthcare is a model which delivers outcomes that matter to people, and may have the potential to reduce Australia’s level of health expenditure waste.⁶ The current combination of fee-for-service, activity-based funding and block funding of healthcare in Australia does not incentivise optimal care or produce better health outcomes.⁵ Value-based models such as bundled payments and fee-for-performance, may have a positive impact on healthcare quality, and patient outcomes.^{7, 8}

Outcomes we’d like to see

• Federal, State and Territory government commitment to explore and implement innovative funding models.
• Improved reporting of treatment costs and treatment outcome data across the healthcare sector.
• Development of a plan for the implementation of successfully trialled and scalable value-based payments in cancer care.

3. Reduce out-of-pocket costs for people with ongoing and long-term treatment and management related expenses.

Impact of this issue

The financial cost of cancer can be a long-term issue for people living with metastatic disease and for those who have completed active treatment but require ongoing management. In these situations, the financial costs of cancer may decrease, but overall expenses are still likely to be higher than for someone who has never experienced cancer. Those experiencing long-term metastatic disease generally have higher costs than those with non-metastatic disease which may include follow-up appointments, ongoing medications, and the loss of income due to a reduced capacity to work. These long-term costs can act as a barrier to people affected by cancer to maintain their ongoing treatment or survivorship plans. Given the nature of health funding in Australia, reform would need to consider both Federal funding of healthcare and State and Territory administration of healthcare services to reduce such out-of-pocket costs.

Outcomes we’d like to see

• Models of care for people living with metastatic disease or in the survivorship phase that support individuals to achieve optimal outcomes.
• Funding of these models of care that reflect the costs associated with long term treatment, recovery and management for childhood cancer survivors and people with metastatic disease.

4. Ensure that people affected by cancer can access appropriate insurance policies without discrimination. 

Impact of this issue

When accessing insurance policies, including travel and life insurance (including death, permanent disability, trauma or critical illness and income protection cover), people with a previous diagnosis of cancer may face additional barriers. The insurance that they can access is likely to be more expensive than if they hadn’t had cancer due to the underwriting process. Insurers assess the level of risk or likelihood of the person making a future claim based on a range of data including medical history. Therefore, insurers may ask for diagnosis information and medical records, including the histology report, history of relapse or recurrence, remission length of time, treatment type, and current medications before they decide whether to cover the person. This may unfairly impact people affected by cancer as insurance companies may offer the insurance at a higher premium, with exclusions, or may refuse cover altogether. People who have not had cancer but have a family history of cancer and/or confirmed genetic predisposition to certain types of cancers through genetic testing may also face similar difficulties in accessing insurance.

Australia’s disability discrimination legislation permits insurers to take a cancer diagnosis or history of cancer into account when offering a policy of insurance, but any assessment must be supported by statistical or actuarial evidence.

Outcomes we’d like to see:

• Improved access to risk-rated insurance products for people affected by cancer.
• Improved understanding of insurance related issues, rights and obligations among people affected by cancer.
• Improved training and insurance claim processes that better reflect the needs of people affected by cancer.
• Legislative reform akin to the ‘right to be forgotten for cancer survivors’ laws in the European Union.
• No genetic discrimination when people are accessing insurance policies.

5. Improve the operation of the Pharmaceutical Benefits Schedule safety net co-payment structure.   

Impact of this issue

People affected by cancer experience out-of-pocket costs when accessing the medicines that they need for their cancer treatment. The cost of prescription medicines that are subsidised by the Pharmaceutical Benefits Schedule (PBS) apply a tiered payment system that enables a concession card holder to pay a smaller co-payment fee when compared to someone without a concession card.⁹ While the cost of such medicines would be even higher without the PBS, for low-income households sitting just above the concession card threshold, the costs can be quite substantial and may lead to financial toxicity.

Another source of financial burden is the problematic operation of the PBS safety net’s record keeping requirements and thresholds of cumulative out-of-pocket costs. The PBS safety net threshold, when reached, allows a person to purchase medicines through co-payment arrangements which mean they pay a cheaper price, or can access certain medicines free of charge for the rest of that year. For people without a concession card, the PBS safety net threshold is nearly six times higher than the safety net for concession card holders.⁹

Outcomes we’d like to see:

• Implementation of a Pharmaceutical Benefit Scheme safety net system and payment model that supports low-income households who experience significant out-of-pocket costs for medicines.
• Improved record keeping to remove the onus from the individual to record and maintain their safety net expenditure.

6. Reform social security programs and income support available to people affected by cancer.

Impact of this issue

Our short/immediate term policy priorities are focused on improving Services Australia’s ability to better support the experience of people affected by cancer with accessing current society security programs and income support. However, there are calls for broader improvements and reforms to Australia’s social security system’s programs and payments.¹⁰ Prior to April 2021,¹⁰  the payment rate of JobSeeker, previously known as Newstart Allowance, had not been substantially increased since 1994.¹¹ People with cancer report difficulty with obtaining eligibility to the higher paid Disability Support Pension (DSP); and are instead subject to JobSeeker. Without wider policy changes, people affected by cancer risk being significantly burdened by medical and living expenses, and their reduced capacity to work, comprising their ability to complete treatment and recover. Income support payments need to be reformed to ensure that the low-paid and unemployed can access a basic standard of living.

Outcomes we’d like to see:

• Review and reform the range of social security programs and income support eligibility, administrative and compliance requirements to better reflect the circumstances and needs of people with cancer.
• A considerable increase in income support payments to ensure a minimum standard of living.